Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 I am so grateful for this group. I went to see the pulmo dude yesterday and I have been gone 12 hrs today going to downtown Chicago to see the Rhuemie and the Heart Dr's.I was really down in the dumps THEY ARE changing MY MEDS BECAUSE my scleroderma is what is ruining my heart, lungs , stomach and kidneys. I will start cellcept for the scleroderma and 3 or 4 meds for the heart problems. I am finally off prednisone after 2 1/2 yrs and until this January I thought I was doing alright. The blood infection has changed everything . I can only do 1/4 of what I used to do. This has been very hard on me because I had planned things to be so different and to decline gradually as I had been. To have it slam me just like that has been a bitter pill to swallow..I feel so much better after reading MB,Bruce and Peggy's notes and of course Lou is an inspiration to us all . So I am done feeling sorry for myself and will live each day doing the best I can and that is all I do. So hugs and prayers to everyone. IPF 2/07 IL Scleroderma Raynauds Sjogrens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 Dear , I'm so sad to be reading all this Kiki (that's really how I always think of you!) Scleroderma can be such a cruel disease from what I've been researching..it looks likem you have been unlucky enough to be one of the rare ones that gets hit by the complex 'organ' involvement variety. I'm trying to remember whether you have skin change involvement ..am I right in thinking that your skin isn't predominantly affected????? You have such a lot to deal with right now...are you connected with a Scleroderma Support Group? Let's hope they can put a great 'cocktail' together to get it under control. Until then we can love & holdyou from afar & you can KNOW that we're hurting along with you! Hugs, in Oz >> > I am so grateful for this group. I went to see the pulmo dude yesterday and I have been gone 12 hrs today going to downtown Chicago to see the Rhuemie and the Heart Dr's.I was really down in the dumps THEY ARE changing MY MEDS BECAUSE my scleroderma is what is ruining my heart, lungs , stomach and kidneys. I will start cellcept for the scleroderma and 3 or 4 meds for the heart problems. I am finally off prednisone after 2 1/2 yrs and until this January I thought I was doing alright. The blood infection has changed everything . I can only do 1/4 of what I used to do. This has been very hard on me because I had planned things to be so different and to decline gradually as I had been. To have it slam me just like that has been a bitter pill to swallow..I feel so much better after reading MB,Bruce and Peggy's notes and of course Lou is an inspiration to us all . So I am done feeling sorry for myself and will live each day doing the best I can and that> is all I do. So hugs and prayers to everyone. IPF 2/07 IL Scleroderma Raynauds Sjogrens> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 Dear , I'm so sad to be reading all this Kiki (that's really how I always think of you!) Scleroderma can be such a cruel disease from what I've been researching..it looks likem you have been unlucky enough to be one of the rare ones that gets hit by the complex 'organ' involvement variety. I'm trying to remember whether you have skin change involvement ..am I right in thinking that your skin isn't predominantly affected????? You have such a lot to deal with right now...are you connected with a Scleroderma Support Group? Let's hope they can put a great 'cocktail' together to get it under control. Until then we can love & holdyou from afar & you can KNOW that we're hurting along with you! Hugs, in Oz >> > I am so grateful for this group. I went to see the pulmo dude yesterday and I have been gone 12 hrs today going to downtown Chicago to see the Rhuemie and the Heart Dr's.I was really down in the dumps THEY ARE changing MY MEDS BECAUSE my scleroderma is what is ruining my heart, lungs , stomach and kidneys. I will start cellcept for the scleroderma and 3 or 4 meds for the heart problems. I am finally off prednisone after 2 1/2 yrs and until this January I thought I was doing alright. The blood infection has changed everything . I can only do 1/4 of what I used to do. This has been very hard on me because I had planned things to be so different and to decline gradually as I had been. To have it slam me just like that has been a bitter pill to swallow..I feel so much better after reading MB,Bruce and Peggy's notes and of course Lou is an inspiration to us all . So I am done feeling sorry for myself and will live each day doing the best I can and that> is all I do. So hugs and prayers to everyone. IPF 2/07 IL Scleroderma Raynauds Sjogrens> Quote Link to comment Share on other sites More sharing options...
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